Anyone with Ph+ ALL + IKAROS deletion on ponatinib and NO transplant? Long-term remission stories?
Hi everyone,
I’m a 31F diagnosed with Ph+ ALL with IKAROS deletion earlier this year and wanted to see if there’s anyone here in a similar situation.
I’m currently on cycle 5 of Hyper-CVAD (out of 8 planned cycles) along with ponatinib 15mg, followed by 2 years of maintenance. My doctors are not recommending a transplant for now, because things have been responding really well.
After induction my MRD was 2.19, but since then all my DNA/genetic testing has been negative and showing the TKI is working well. At the moment everything is looking positive and I’m in remission.
I know IKAROS can be considered higher risk, so naturally relapse is something I think about a lot.
I’m wondering:
Is anyone else here with Ph+ ALL + IKAROS deletion who didn’t do a transplant?
Is anyone on ponatinib 15mg long-term?
Has anyone stayed in long-term remission (years) with Hyper-CVAD + TKI without transplant?
For people in a similar situation, what did your doctors tell you about relapse risk?
I know every case is different and no one can predict outcomes, but I’d really love to hear from anyone in a similar situation